Jul 182015
 
"Point Pinos" is one of two of my paintings (along with one of my wife's) hanging in the permanent art collection of the Muscular Dystrophy Association.

“Point Pinos” is one of two of my paintings (along with one of my wife’s) hanging in the permanent art collection of the Muscular Dystrophy Association.

Ten years before this blog began, and several years before the term “blogging” came into general use, IBM had taken my life in a new direction. Besides forcing me to give up a career as a writer and advertising agency owner, it had herded me into a new career as a watercolor artist. Within months of closing the doors to my ad agency, I was opening books on painting techniques, design theory and color harmony. I joined an outdoor painting group, then became a member of the San Diego Watercolor Society – one of the largest groups of its kind in the world – and soon became a board member and eventually president.

This was   my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This was my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This new avocation gave me such pleasure and added so much meaning to my life that I had to share the news. I talked to members of our local Myositis Association (TMA) support group and they encouraged me to take my message to the national conference that was coming up in Houston. This was in 2003. The organizers of the conference also encouraged me and gave me a booth where I could display several paintings and hand out literature.

 "Monterey Bay" (15 " x 22 ") will be auctioned  at the 2015 national conference of the myositis Association to raise money for research.

“Monterey Bay” (15 ” x 22 “) will be auctioned at the 2015 national conference of the myositis Association to raise money for research.

Twelve years later, I have once again been approached by TMA to participate in their national conference in Orlando. Of course I cannot travel there, but one of my paintings is making the trip, along with this updated version of my literature (below). The painting will be auctioned with the proceeds going to benefit research into myositis. One session of the conference is about finding purpose in life following disability, so I am very pleased to participate in this small way.

 If you click on this image of the front and back cover it will make it large enough to read.

If you click on this image of the front and back cover it will make it large enough to read.

 This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

They titled this session “Act II” but if I could be there in person I might add that myositis is not necessarily a two act play. It has been nearly 5 years since I was forced to give up painting due to seriously declining strength in my hands and arms. Of course that led to yet another exciting pursuit – – writing a blog and a book taking advantage of voice recognition technology and electronic publishing. (Which reminds me, my book has been published for nearly a year and a half now and sales have slowed down considerably after beginning with quite a flourish. I didn’t publish the book to make money, in fact I have given away nearly as many as I have sold, but I am curious why it seems to have been forgotten. It was written to help people with myositis, especially those newly diagnosed, because this is not a common illness and coping with it is not a common skill. You don’t even have to pay for the book if you don’t want to because Amazon Kindle owners can read it for free. I’ve included the link below.

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Nov 182013
 
Read more about my drinking problem below.

Read more about my drinking problem below.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.


Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.


Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

Jul 212013
 

Mike wearing GoPro

Here I am wearing my new camera. I just have to be careful not to nod my head if somebody waves to me!

Every time I think I have hit upon a pastime that I can continue to pursue despite the progression of my illness, I discover how wrong I was. When I was forced to give up work, I took up painting. That lasted for 10 years until my arms and hands became too weak to guide a brush. So I decided to take up writing a blog. But that meant I had to overcome the weakness of my fingers – fortunately voice-recognition was improving and it is a pretty good substitute. However the other part of writing a blog is photography. Over the past few months my hands and arms have become too weak to hold the camera or cell phone and press a shutter. Since part of my new “job” now that I am living at Huntington Manor assisted living is maintaining their website and blog, photography is a very important part of my work. I was about ready to throw up my hands and quit (except I cannot throw up my hands anymore) but then I was watching a NASCAR race and one of the cars was sponsored by GoPro. I had heard the name before and knew that it was some kind of camera system, so I looked it up on the Internet. I discovered that the GoPro was a very compact camera that had been designed by surfers to allow them to make videos of their rides. It soon spread in popularity and was used by skateboarders, skiers, model airplane builders, free base jumpers, and just about anyone who wished to make a video record of their exploits. It came with a waterproof housing of course but that did not interest me so much. What really caught my attention was both its light weight and the fact that it could be controlled remotely using an iPhone app.

I visited my favorite store (Amazon.com), read about the various models and ordered the GoPro Black, the one with the highest resolution. I also ordered the special mounting system that goes around the head. Now I have a camera system that I can take with me without having to hold it in my hands, and I control all of its functions from my iPhone resting on my lap. I have been using it for a couple of weeks now and have already produced a major video for Huntington Manor as well as taking the number of other photographs. It does not have a zoom, but it has the capability of taking very high resolution video, double the size of high-definition, which means that I can use video editing software to zoom in on sections that I have shot, without winding up with fuzzy, pixelated video. Below are my first videos produced using this camera.

I have included this link to the GoPro camera description on Amazon in case anyone is interested in getting one for themselves. There are three different models, but I highly recommend getting the highest resolution “Black” model which would then allow zooming in postproduction.

This is a video I made about the Huntington Manor Summer Picnic. It includes the food preparation in the kitchen as well as the event itself. All the video was shot with the GoPro camera, and edited using Final Cut Pro Xon my iMac. The background music was created using Band in a Box, The only way I can create music these days is using that program. I can use one finger to type in the chords and a simple melody and it does the rest.

Here is another video shot with the GoPro. I placed it near the bird feeders at Huntington Manor and from a distance waited for the goldfinches to arrive and then started the camera recording. The video was shot at 120 frames per second to produce the slow-motion effect.

Apr 222013
 


Amazingly enough, I have had a few requests for the sheet music for this song I wrote. I have finally figured out how to accomplish that using a combination of Band in a Box and Photoshop. Please feel free to sing my song whenever the spirit moves you. (I’m sure you can improve on my rendition.) Of course, I am reserving the rights for any recorded or published versions of my song. Cick on each thumbnail to bring up that page of the song.
If you have trouble downloading the files, send me an email (mike@lifedisabled.com) and I’ll send them to you as an attachment.

Nov 092012
 

BethTimeLine30x20sm

A visual snapshot of Beth's life.

The first time I held Beth’s hand, she looked into my eyes and my heart was stolen. The last time I held Beth’s hand, she closed her eyes and my heart was broken. But the glorious years in between have been more than worth the agony I am feeling now.

The places we went, the love we shared, the friends we made, the children we raised …

Our favorite things to do together were traveling and throwing parties. I always suspected that both were just excuses for a new wardrobe, but as beautiful as she was who could possibly say no?

We would travel by car usually. I liked to drive and she liked to sleep. Once in a while she would wake up long enough to see something along the way. When we returned, Beth would take those visual memories and turn them into incredible works of art. One was Maui jungle, where she managed to distill a week of driving around the island onto a 2″ x 3″ piece of zinc. That image won major awards and the edition of prints sold out.

When I was forced to retire due to my disability, I took up painting as well and we enjoyed our trips even more. We would come home to our studio and commit memories to paint and paper. This was a very happy time. But then I became even more disabled to the point where we could no longer be away from home at night. Beth began losing her eyesight and was diagnosed with her own physically disabling disease.

For a while, we continued to paint, drawing upon the memories of previous journeys. But for the past 2 years, painting simply stopped. Beth couldn’t see well enough and I couldn’t move my hands well enough and the focus of our lives turned to helping each other get by.

And now Beth is gone. But she is still helping me get by. Because she has left me with a lifetime of beautiful memories.

Her loss gives me great pain, but it is a small price to pay for the richness that she has left behind. Beth, I will always love you and I will forever thank you, for having been my wife.

Oct 142012
 

Beth at Art Reception

Beth at an art reception last year.

Three nights ago I got those terrible phone calls. The first was from my wife’s new assisted-living facility. She was being rushed to the hospital. The second call was from my daughter who was on her way to meet the ambulance and said she would send her husband to get me. When I got inside the emergency room my daughter met me and said “brace yourself, it’s very bad”. Beth, my wife of 38 years was lying on the bed, a ventilation mask over her face, her chest heaving in response to the high amount of pressure they were using to force air and oxygen into her lungs. My daughter explained that without that she could not survive. Although my wife had a Do Not Resuscitate order, my daughter made the decision to allow them to take this extra step to keep her alive until I could be at her bedside and to give us time to bring our two daughters down from Orange County.

So we talked with her as her body struggled. She managed one-syllable answers and at one point opened her eyes and squeezed my hand. Then our daughters arrived and we gathered around and told Beth how much we loved her (although there really were no words that could possibly say how very much that was).

Beth on the beach with our daughters.

Each summer Beth and our daughters would stay at the beach in La Jolla for a couple of glorious weeks.


The doctor gave her pain killer and a sedative, then removed the mask. We held Beth and continued to talk with her as she struggled to breathe on her own. All too soon, she took her last breath and I felt her fingers relax their hold on mine. My wife, my soulmate, the mother of our children, was gone.

As I write this, there is no way to describe the agony. If I could, I would change places with her in an instant, but I can’t. Somehow I have to make sense of a life that doesn’t include Beth and try to use the time I have left to continue to write and help the world know more about the wonderful woman it has lost.

Spring Ahead Watermedia Painting by Beth Shirk

One of Beth's last works of art, Spring Ahead won many awards and now hangs in my room.

Aug 042012
 

Note: At the time this series of articles was written, my wife Beth was still with us. She died October 11, 2012.

There is downsizing, and then there is moving to assisted living. Downsizing presents difficult choices of what to keep and what to take with you. Moving to assisted living presents impossible choices.

One way we managed to deal with it was to simply not make many of the decisions. Instead we had our daughters go through our stuff and make a lot of the choices for us, without us being present. Did we agree with every choice? Of course not. But it at least it let us whittle things down to a manageable size.

Another way to approach it is to choose between what you really need and what you think you simply can’t live without. In my case, since I knew I was going to continue to do work in the website design and graphics arts field, I definitely had to take all of my computer gear and cameras. Plus my manuals on software and programming. Beth wanted all of her art supplies, of course.

How do you downsize this?

How do you downsize this?

Clothing was also easier for me, since I really can’t wear standard clothes anymore. I just needed to bring along half a dozen of my specially constructed pants, and a dozen or so shirts. Plus some jackets.

Beth wanted to bring enough to fill several closets so we compromised by storing winter clothes off site and bringing all of her summer clothes. Then we will have to make the switch in the fall and hope we guess right on the weather. I also gave her half of my closet for coats.

Then there are the keepsakes. How could we possibly get rid of any of the vases that people had given us over the years? Well we had to, and every few days we will remember one that would’ve been just perfect for a particular location or occasion. The other really big issue was Christmas decorations. We have been allowed to store some here underneath the facility in their basement, but that still begs the question of what we will do with them come holidays. Perhaps we will be able to use some in a common area here at Huntington Manor.

It’s my belief that the key to this whole process is to try your best to live in the present. Every time we start thinking about things we left behind it becomes difficult. But in truth, nothing we left behind is needed for our daily lives. And the real memories aren’t stored in vases or garment bags. They are in the mind.

Which reminds me to return to working on my first book, “The Society of the Creek.” It is a book about childhood, written for an adult audience. I plan to post some excerpts here.

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

Jun 112012
 

Note: At the time this series of articles was written, my wife Beth was still with us. She died October 11, 2012.

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.

Once we decided we needed assisted living, there was another choice to make — which facility. We knew the change was going to be huge, whichever facility we chose. so we tried to find as many ways as possible to keep our life intact. This included finding a place not too far away so the overall community would still be familiar to us, and one that would allow us to bring enough personal items to continue our lifestyle as best we could. For example, we both use power wheelchairs and wanted to continue to do so as they give us the independence to travel several miles into the surrounding area. We are both artists and wanted to be able to bring our art supplies and our table. Of course we wanted to remain together for as long as possible.

We did a CANHR (California Advocates for Nursing Home Reform) search and it yielded nearly 700 facilities just for San Diego County. Most are converted single-family homes where they are able to keep six residents, two to a bedroom. Small facilities such as this do not have as restrictive licensing requirements as larger ones and they may be less expensive. For many people this might be a good alternative, however for us they were not appropriate.

Huntington Manor Dining Room

Every few days, before signing a contract, I would roll into the Huntington Manor dining room unannounced.

We needed wide hallways and doorways and adjoining separate rooms to accommodate our large wheelchairs — a physical layout rarely found in a single-family home. Since I cannot help with transfers, I needed a team of caregivers or an overhead lift system. I was also concerned whether a small facility would have the level of care we needed for Beth’s complex medication management and my challenging physical state due to inclusion body myositis.

There are several large assisted living facilities in the county, but they have fire code restrictions that prevent them from accepting non ambulatory residents. Most have associated skilled nursing facilities which is where they suggested I stay, but that would totally restrict my freedom and be very expensive. Also, because our needs were different, the large facilities planned to put my wife and I into two separate buildings.

After eliminating hundreds of facilities, we came upon Huntington Manor, just five miles east, in Poway, California. At 27 residents it was neither large nor small, which for our needs was just right.  It came with good online recommendations and had beautiful surroundings. What really caught my eye was their statement that they accepted nonambulatory patients. Huntington Manor specializes in caring for the frail elderly and has done all of the necessary legal groundwork to be able to accept up to 21 residents who are unable to bear weight. Also, for the first time, I found a facility owner who was willing, even eager, to let me install an overhead lift system in my room.

I stopped by several times, unannounced, to observe the staff and sample the food (friendly, delicious).

A plate of BBQ chicken, carrots and peas

With plates like this, Huntington Manor passed the taste test.

One drawback, which the owner made sure we understood, was the age of the other residents. Most are in their nineties, so we may need to look outside the facility for social interactions.

Price was an issue of course and although Huntington Manor was less expensive than some of the very large facilities, it is still more than we can afford indefinitely. Eventually we will need to sell our home and after that within a few years we’ll need to find some other living arrangement.

In the meantime I am looking for additional sources of income. (Any potential sponsors for this blog site, please take note.)

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?